APS or not?

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kara
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Re : APS or not?

Postby kara » Fri Aug 15, 2008 11:24 am

APS is Anti-phospholipid syndrome. Anticardiolipin, Betaglycoprotein and Lupus anticoagulant are all considered antiphospholipids. You can have any or all and still not have APS. If you test positive for any of them you should be retested within like 8 weeks. Any of these can cause problems in pregnancy as they tend to make you clot more easily...add to that the hypercoagulative effect pregnancy causes and you can have problems. You may or may not have APS - that's a bit harder to say. Generally APS includes other problems and symptoms. If your levels are borderline you may be told to take LDA. Heparin is a little more touchy and you'd probably have to have very conclusive tests before it would be prescribed. Course I'm not a doctor. :-) There are some good websites out there with APS information.
Let us know how your tests turn out Nicole.

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misscoleyp
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Re : APS or not?

Postby misscoleyp » Thu Aug 14, 2008 09:58 pm

I'm going to jump in on this one. Silly question... APS? Is that the same thing as the anticardiolipin? My IgM came back at 20 and my RE is having it retested. My labs are 2 years old and were done 4 months PP. My ob was really waiting to make sure all my blood in my body was mine before doing the tests. I had something like 15 units of blood during the day of *.

This is all really new to me. I new about the low positive results, but I was told it didn't cross the placenta and wouldn't cause problems. Now my RE says it can cause problems with the placenta and if the new tests confirm, he wants me on Lovenox or Heprin. He is also having these new tests done at a lab he said is great with these tests. My last labs were sent to Utah.

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Re : APS or not?

Postby cda » Mon Jul 28, 2008 11:05 pm

Well I went to my MFM last Thursday and he suggested that I do not get the heparin/lovenox shots; however, I will still be on the low dose aspirin until 36 weeks. Because everything was fairly normal with my placenta with my first son (some fibroids and basically a normal size, but not really any significant clots) and I do not have any complications outside of pregnancy and had this past test negative, he thought the risks outweighed the benefits at this point. I asked if he would give me another test later on in the pregnancy and he said that would be fine. I asked if it did come back positive if he would then start me on shots? He explained that the shots had to be given over a long period of time to be effective, does that sound correct? Unless I absolutely had to I really did not want to start the shots this early, I am only 8 weeks, because of the risks, but I am not an expert by any means. We will just pray that all goes well with this pregnancy and then have more tests after he/she is born. Thanks again!

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Re : APS or not?

Postby deerhart » Fri Jul 25, 2008 09:53 am

I will jump in as well. My hemotologist told me to expect that my levels would fluctuate throughout my life. On my test (taken 10 months after my youngest son was born) my IgA's, IgM, IgE, and IgA all came back very high as well as my fibroigon (yeah I can never spell this word). Not just a little bit high, but most of them were twice the high level of normal. My IgE's are always expected to be abnormal (I have horrible allergies and asthma).

At that point my hemotologist said she had never seen numbers like min in a women who had given birth to a living child without lots of intervention, let alone a woman who had never had a miscarriage and given birth to 2 living children w/o treating the APS. She also advised not to risk any more kids as she put my chances of again having complications between 75-90% and still over 50% with heprin therapy.

My hemotologist broke protocol and diagnosed me with just the one test (probably due to how high the test results were). Though I do nothing to treat for it as I am basically asymptomatic. But it is good to be aware of the problem as I know something could happen and its all over my records so docs know what to look for.

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Re : APS or not?

Postby kara » Wed Jul 23, 2008 05:33 pm

Hi Courtney,
My docs won't diagnose a woman with APS based on blood tests until AFTER 6 months post partum, with a follow-up again no later than 12 weeks after the first test. So it could be possible that your pregnancy hormones interferred with the tests....or you could just have fluctuating levels right now.

There aren't a lot of docs who are very informed about APS. Your IgG titers seem fairly high from the first test...all labs have different cut offs, but high 30's to 40's is usually a high titer cutoff.

I too meet all the "criteria" for APS, but I don't yet have a diagnosis, either. Most docs I've talked to tell me that when I have a couple miscarriages, or a blood clot outside of pregnancy they'll talk to me more about it.

And sometimes women only produce the antibodies during pregnancy too. Pregnancy is already hyper-coaguable state, so adding these antibodies can cause problems...like severe PE. And then things go back to normal after about 6 months post partum.

My MFM's plan for me is low dose aspirin until 12 weeks, and then adding in lovenox. Although my last LA test came back right on the borderline, so I imagine we will test again before we make that decision. Though I've had several test done at several times and they all come back high to borderline high.

I would say your APS diagnosis isn't clear and it would be a good idea to talk to your MFM about it in more depth. See if he thinks the timing of the first tests may have disrupted the results, or if you should be tested again before you do lovenox? Or, he may just recommend a low dose of lovenox due to your past experience too...

Let us know how it goes!

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Re : APS or not?

Postby cda » Wed Jul 23, 2008 04:40 pm

Thanks all for your input, I really appreciate it. The recent tests I had were only for the IgG and the IgM, but not IgA. The first appt. was pretty much hypothetical and he did not have any recent results. The MFM also said that I would start the low dose aspirin and possibly the heparin/lovenox shots at a +hpt, but wanted to see my recent tests. He did say that because I was so severe and the sudden onset that he may start me on the shots no matter what.

theartsymom- I can definitely get a second opinion if I choose.
rachelc- I would like to be tested again at least once during my pregancy to see if anything changes.
Kara- I was not officially diagnosed (as far as I know) I was just told that I carry this anticardiolipin antibody. I do not have blood clots outside pregnancy and this is my second pregnancy so no miscarriages. Also my son was not considered to have IUGR- he was 2 lbs. 6 oz. at 29 weeks. My tests were definitely done within 6 months and within 12 weeks. My recent test that came back negative was sent to Utah. I am not sure about the initial tests that came back positive.

If I do not have APS persay, is it risky to be on the shots?
I have an appt. tomorrow so I guess I will find out then. Thanks again!!!

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Re : APS or not?

Postby kara » Wed Jul 23, 2008 01:45 pm

Hi Courtney,

I have some personal APS experience. A few questions for you...Were you actually diagnosed with APS? Have you had blood clots outside of pregnancy or repeated miscarriages? Was your son considered to have IUGR (intra uterine growth restriction) or below the 5th percentile for weight when he was born?

As far as your first anticardiolipin test, my docs don't like to do the APS blood tests until 6 months post partum because pregnancy hormones can cause the tests to be inaccurate. And then, you have to be retested within like 12 weeks to see if the anticardiolipins (or lupus anticoagulants) are still elevated. That being said, these values can fluctuate, and even the testing lab can make mistakes as well. When I'm tested for my lupus anticoagulants, my doc can send samples to three different labs and get three different results. There is one lab that is much more reliable than others that we typically use to send my blood work out to. So you may ask about having the blood sent out to another lab, one that specializes in testing for these antibodies. There's one in Utah and one in Minnesota that I know specialize in thes tests.

In addition people with APS generally have additional problems and symptoms beyond Preeclampsia and premature birth with IUGR that cause problems in their everyday lives. APS is fairly rare. I can't say whether you have it or not, or whether your blood values are just fluctuating. Heparin/lovenox does have risks, so I think I'd ask for a retest of the blood at another lab, and perhaps retesting again in several weeks before deciding on the heparin (unless your doc makes a recomendation one way or another).

Let me know if you have additional questions! Good luck to you!

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Re : APS or not?

Postby rachelc » Wed Jul 23, 2008 11:57 am

I'm wondering if they can/will retest you at some point during the pregnancy. In my last two pregnancies I had low protein S (another blood clotting disorder) but, 6 weeks after had normal tests. Because I had low protein S, I was put on LDA and heparin.

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Re : APS or not?

Postby adgirl » Wed Jul 23, 2008 09:52 am

From the very little I know about APS, I think you have to have 2 readings a certain amount of time apart in order to officially be diagnosed. We've got some APS ladies here who I'm sure will be along soon.

As far as treatment, I definitely talk to some other doctors - you'll feel better if you get 2 separate people to advise the same treatment!


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theartsymom
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Re : APS or not?

Postby theartsymom » Wed Jul 23, 2008 08:51 am

courtney,
I had DD at 31 weeks in june 2005 b/c or HELLP. When we decided to TTC, we had all the blood work done with my OB- and has two positive tests the mthfr677c and aas. Both were barey over positive (one point and two points). The ob recommended heprin/lovenox at +hpt and till 6 weeks PP.
The first MFM said that we needed no treatment and that he would not take us as patients.
The second MFM recommended LDA, but not heprin/ lovenox in my case.
Can you get a second opinion??


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